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A worthy life: Who is disposable?

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There’s a new assertion going around, uttered mostly by politicians and pundits, that goes something like this: “Vulnerable people should be willing to die for the economy.” These sentiments have shocked and appalled many, and, while I am appalled, I am not shocked. 

Living with several chronic illnesses that significantly impact my ability to work in a traditional 9-to-5 job, and being a student of disability theory within academia, I am acutely aware that our society has long accepted the concept that a person’s economic output determines whether their life has worth or not. Disability theory tracks this mindset to the industrial revolution and modern capitalism, for which bodies needed to be interchangeable machines that create a steady economic output. Said output was then tied to pay and pay to moral worth. Work as worth has always been a key part of the Puritan and Protestant fabric of America, and so these values have found fertile ground. 

Now, there is a lot I could say about the moral, ethical and economic validity of this mindset — something I have done and will continue to do in my academic work — but what I want to talk about right now is the personal, the minute, the human. 

When I was in middle school I became severely ill. Though I was diagnosed and began treatment years later, my body will never support my working full time in an office. I am fatigued every day. I get migraines and brain fog. Often I don’t have enough blood pumping to support my body’s needs, and my autonomic nervous system is a disaster. 

Before I got into Stanford, when I was a high school dropout being home-schooled, my doctors and peers looked at me with a mix of pity and distrust — as if I were pulling one over on them, trying to game the system with my hours of rest and seemingly endless need for sleep. Once I was accepted to Stanford, everything changed. It didn’t matter that I wasn’t any healthier, now doctors, relatives, strangers treated me as a person worthwhile of their time and care. Nor did anyone seem distressed that I took a reduced course load, which allowed me to work the same number of hours I had in high school. My health and output were the same, but everything was different. 

The brand name “Stanford University” has worth. It is a valued commodity that blanketed me in the protection of being a valued and useful member of society. And with it came the thing that people with disabilities and chronic health conditions value above all else, the security of incredible health insurance that allows me to get my bi-monthly infusions — infusions that, without insurance, would come to $90,000 each, insurance that allows me to get my yearly invasive tests with the anesthesia I need, insurance that allows me to go to the emergency room when I need to without fear of economic ruin. Without Cardinal Care — or equivalent insurance — I will die. Not overnight, not even over a few years, but without my insanely expensive medications and annual tests it will happen. 

And this brings us back to the original sin of how our country views the ill and disabled. With the piecemeal destruction of the Affordable Care Act, a person without either a job that provides health insurance or the misfortune to be poor enough to qualify for Medicaid faces the prospect that comprehensive health insurance will be unobtainable. 

I worry constantly: Will any job or graduate school that can accommodate my health disability have the insurance to provide the care I need to stay alive? This is the reason my parents stay up at night worrying about what will happen once I graduate. This is why we are going through the records my grandmother smuggled out of Czechoslovakia when she fled the Nazis to see if I can qualify for Czech citizenship. This is the problem that makes me fear that my years under Stanford’s protection will come to naught. 

And here’s the thing: I am no more worthy of healthcare now than I was before Stanford accepted me. Nor am I more worthy than people with similar health conditions who didn’t or couldn’t go to Stanford. I don’t deserve to live because I am academically inclined any more than I deserve to die if I cannot find a job that both fits my accommodation needs and provides insurance. And there are so many people like me. 

So, if this pandemic and the callousness of some of our leaders’ remarks about priorities make us ponder anything, it’s this: Do we want to be a society that decides who lives and who dies based on health, age, ability? Are we willing to sacrifice lives for the economic prosperity of some? We already do, and we always have. But maybe this pandemic can offer an opportunity for us to rethink that. 

Perhaps it is selfish of me to advocate for an issue so closely tied to my personal well-being, but Stanford has given me a platform from which my voice matters to the outside world more than it ever did before. And so I’m using that voice to ask that when you gasp and shake your head at comments like “I’m willing to die for the economy” — invariably uttered by those who are safely ensconced — you remember that people who didn’t volunteer are already dying. And that it doesn’t have to be that way. 

Contact Jen Ehrlich at jene91 ‘at’ stanford.edu.

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